How We Talk About Autism

I really need to stay away from social media.

Don’t get me wrong. I love seeing what everyone looked like ten years ago, quizzes that reveal my elf name, and memes about killing anyone who messes with your kids. That’s all fine. Every once in a while, though, something comes along that pushes me over an edge that I didn’t even know was there.

wdoIt happened this weekend when, while scrolling, I came across a picture of a boy smiling for the camera. Posing in his Sunday best, he looked so happy. Weird thing to be annoyed at? Well, I wasn’t until I read the accompanying text.

The boy had Autism, much like my son. Of course, like many children on the spectrum, he didn’t share many of my son’s signs. You know how I know? Because his mother, who is a stranger to me, decided to list every single thing she considered to be problematic with his behavior.

In bullet-point fashion, she went through everything. He has to be told to follow rules but doesn’t. He lines things up. He asks too many questions. He’s this. He’s that. The character assessment lasted for an eternity and, at the end, the gist was something along the lines of “But I love him anyway!”

What followed was a barrage of sad face emojis and hearts mixed in with the occasional, “Stay Strong, Mama”. The whole thing left me feeling uneasy and I reminded myself to never do anything like that to my own child.

It would be easy to throw my own life back in the face of someone like this in the same manner. I can take an itemized list of all the difficulties my non-verbal son has and all the work it takes us to correct it. I can play the pity game right along and try to out miserable her. We can sit here crying to each other all day until the Lord of Pity anoints one of us as the Master of Misery.

But I don’t and I won’t.

There are two reasons. The first is that nothing is a competition. This boy has his own struggles and they are real. Whatever my son, daughter, wife, cats, or anyone has going on is immaterial in that sense. I would never want to scornfully dismiss what her family is handling because of what is happening in my house. That’s not how parenting works…even though that’s exactly what she was doing.

The second reason is more universal. It’s the whole reason I started writing about my children to begin with. I don’t list all the things my child doesn’t do “right”. That’s not why I am here. You don’t need me for that.

Anyone can tell you the things my child doesn’t do. A casual observer can look at us at a restaurant or getting off the school bus and understand some of his perceived  disabilities. If you want to know what most people would consider “wrong” with my boy, ask most people.

If you want to know what he does right, then you ask me.

Having a child with special needs is difficult. There is no doubt to that. Some days I am tired, sad, frustrated, or angry. But it’s not every day and putting him down in a public setting won’t make me feel better. All the “stay strong” messages in the world won’t make me stronger. They’ll just shine a spotlight on issues I am working on and present them as direr than they need to be.

The difference in thinking is simple and I’ll give you a nearly immediate example that presented itself after I saw that post. My daughter’s Saturday arts class had their yearly performance for family day. It would require us to sit in a room and watch her on stage. The possibilities for disaster were all there, but I made it a point to head over as a unit anyway – all four of us.

howA year or two ago, it was unheard of for him to be present for something like this. We had past years that we stopped in, said hello, and then I chased him through the hallways for the hour. It was a downer but I wanted my daughter to see that we made the attempt. I never want her brother to be viewed as a burden or someone who prevents her family from being together. So, each year, I would watch pieces of her play through the small window on the theater door. There were other families there and, even though he couldn’t control his outbursts, nothing gives us the right to ruin a special day for other kids.

This year, though, it happened. He finally made it through the show. Actually, he made it through the first half hour. The final 15 minutes were too much and we had to leave for the tail end. We watched from the side door but were sure to come running back in for the post-show hug and pictures.

So, what did you get from that story? Did you get the need to post this?

You might be an Autism Parent… if you have to miss the final part of every show because your kid won’t stop shouting out.

You could. I wouldn’t though. If I had to complete the statement, it would be:

You might be an Autism Parent… if you are proud beyond words that your child has learned to sit through over half a school play despite his impulses.

Because I am.

I know that people see his shortcomings. That’s not even about Autism, though. Heck, I don’t have Autism and I know people see my shortcomings. People see other people’s shortcomings. They stand out like sore thumbs. So I don’t need to tell you that part of my son. I need to tell you the positives. He works harder than anyone I’ve ever known. I watch him push to take every step forward and earn every achievement. Sure, he made me leave for the last 15 minutes but those first 30 must have felt like an eternity to him. Yet, he did it. He did it for his sister and he did it for his family. He did it because he loves us.

He may not have the words to tell me that, but he doesn’t need them. I can feel it. That’s why I don’t ever need anyone to remind me to “stay strong”. He’s the only reminder I’ll ever need.

2 comments

  1. Great post, James. And wonderful perspective.

    Our 6 year old son is also non-verbal and what most would call the most challenged end of the spectrum. We learn new things about his abilities every single day. Mostly, I’m constantly amazed by how much more he understands than we sometimes realize.

    Case in point. Every night, part of our bedtime routine is that he comes into our bedroom, closes and locks the door, and then climbs in bed with us until he is almost asleep, at which point, I take him upstairs to his bed.

    Last night, as soon as he jumped up to close and lock the door, my wife was heading to the kitchen. I told him to leave the door open for mom so that she could get back in bed. He still closed and locked the door anyway, but just stood there instead of getting in bed. I even called him over to me and told him to get in bed. But he just stood there waiting. And then in dawned on me that he was waiting for mom to come back so that he could unlock and open the door for him.

    HUGE accomplishment and awareness and engagement.

    Celebrate the accomplishments and milestones. Do not dwell on the limitations.

    Like

    • Robbie, thank you so much for sharing that. It put a huge smile on my face. Moments like that are indescribable. I had a similar situation the first time Lucas went to sit in his spot to eat. I asked him if he wanted a snack and he walked away. I sat there grumbling to myself about how he didn’t wait for the snack and when I turned around, he in his spot waiting. I still think about that and smile.

      Like

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